Dr Anne Johnson Community Engagement February, P a g e

Transcription

1 Consumer and Community Engagement in Health Services: A Literature Review to Support the Development of an Evidence Based Consumer and Community Engagement Strategy for the Women s and Children s Health Network, South Australia Dr Anne Johnson Community Engagement anne@communityengagement.comm.au February, P a g e

2 Contents Executive Summary... 4 Introduction... 4 Search Strategy... 5 Findings... 5 Partnerships in Direct Care... 6 Partnerships in Organisational Design and Governance... 6 Conclusion... 8 Introduction... 9 Patient and Family Centred Care... 9 Health Literacy Search Strategy Part 1: Consumer and community engagement strategies and plans Part 2: Evidence for consumer and community engagement in health services and the methods used Findings Need for Conceptual Clarity Principles of Engagement SA Health Framework Principles Children s Health Queensland Hospital and Health Services Principles of Engagement OECD Principles of Public Engagement IAP2 Code of Ethics Levels of Engagement IAP2 Spectrum Three Levels of Engagement Continuum of Engagement as part of a multidimensional framework for patient and family engagement in health and health care Continuum of Community Engagement Organisational Domain of Engagement Three Organisational Levels Five Levels of Engagement Scales of Participation Organisational Levels of Engagement Three Domains of Engagement Synthesis of the National Safety and Quality Health Standards A New Consumer and Community Engagement Framework The Engagement Cycle Clarity about Terminology Consumer and Community Consumer and Community Engagement Role of Consumers and Community Barriers to Active Consumer and Community Engagement in Health Services Methods for Effective Consumer and Community Participation in Health Services Partnerships in Direct Care Shared Decision Making Participation in Communication Processes and Open Disclosure Communication and Ward Rounds Communication and Bedside Handover Communication and Open Disclosure P a g e

3 Information Provision Printed Information Electronic Media (including Social Media) Interpersonal Communication Partnerships in Organisational Design and Governance Organisational Governance Functional Organisational Chart Mapping for Opportunities and Synergies Formal Organisational Committee Structures Partnering for Hospital Design and Building Initiatives Determining and Embedding Consumer Centred Values Experience-Based Co-Design Method Open Access Board Meetings Community Collaborative Implementing Policy-Relevant Programs Community Level Methods Consumer Engagement Population-Level Interventions Safety and Quality Improvement Methods for Engaging Children and Young People Consumer Feedback and Complaints Management Consumer Stories Real Time Feedback Quality of Care Reports to the Community Consumers Involvement in Staff Selection Review and Development of Information The Need for a Strategic and Coordinated Approach Good Practice Guidelines Methods for Engaging Consumers Partnerships which Reflect the Community and Support People from Diverse Groups and Vulnerable Populations Strategic Approach Cultural Safe Places and Formalising Links with Community Groups and Organisations Community Development Approach Supporting and Informing Consumers who Partner with the Health Service Consumer Training Support and Capacity Building Communicating with Consumers Organisational requirements to support consumer and community engagement Conclusions References P a g e

4 Executive Summary Introduction The Women s and Children s Health Network (WCHN) in South Australia has commissioned this literature review. This is for the purpose of informing the development of their Consumer and Community Engagement Strategy. The aim is to base decision making about the development of the Strategy on best available evidence and insights into effectiveness of consumer and community engagement strategies in health services. Consumer and community engagement in health services has been a priority in international and national policy for several decades. Consumer and community engagement offers a promising pathway toward better quality health care, more efficient health care and service provision, and improved population health (1). Consumer and community engagement involves bringing the voice of consumers and the community into various aspects of a health service s work (1). There is an underlying assumption that through engaging with consumers and the community that there will be at least some level of power transfer and contribution to decision-making processes. Various commentators in their deliberations about the complexities of consumer and community engagement in practice have discussed the different range of factors for health services to consider when developing approaches to consumer and community engagement activities. They represent the multiple contexts in which engagement activities take place (2). o Unstructured Structured o Informal Formal o Passive Active o Individual Collective o One-off Ongoing o Unpaid Paid o Reactive Proactive o Self-interested Altruistic o Resisting social change Driving Social Change Gregory (2008) states that there is no one size fits all approach to consumer and community engagement (1). Methods and techniques should be selected in response to the issues being addressed. Different methods and techniques will be needed at different stages and multiple approaches to engagement will be necessary for health services to be effective in their engagement strategies (1). Two overarching conceptual models appear to interact and underpin consumer and community engagement within health services. These are Patient and Family-Centred Care and Health Literacy. 4 P a g e

5 Search Strategy A structured literature search was used to search widely across different sources of published literature. The search was conducted in January It examined relevant Australian and international studies and reports. The literature search was not intended to be systematic; it was structured to provide an account of the current evidence related to the search questions. There were two parts to the search strategy. Part 1 was to locate examples of Australian health service consumer and community engagement strategies and plans, and Part 2 was to locate evidence for consumer and community engagement in health services and the methods used. The search strategy had five stages: 1. The search engine Google was used to identify grey literature not traditionally published in the biomedical bibliographic databases. 2. The electronic Library data bases Scopus, Science Direct, and ProQuest were used to search the academic literature. 3. Reference lists of key publications identified in stage 1 and 2 were searched for key publications which required further examination. 4. A Literature Map was developed. 5. Where gaps were identified, more specific searches were conducted in the electronic library databases and search engine Google. Thematic analysis was undertaken and key themes and sub themes were determined. A Literature Map was developed to organise the literature and build a visual picture of the themes as they emerged. Once the complexity of the scope of the emerging themes was determined, the decision was made to utilise a higher order structure for presenting the findings about methods of engagement based on a synthesis of the National Safety and Quality Health Service Standards (3). Additional references were sought to contribute to the depth of evidence and examples provided. A total of 161 references were included in the literature review. Findings The literature review revealed that there are complex and inter-related concepts, approaches and methods related to consumer and community engagement in health services that are relevant to WCHN as they consider the development of a Consumer and Community Engagement Strategy. The following themes and sub-themes emerged from the thematic analysis of the literature: 1. Need for conceptual clarity Principles of Engagement Levels of Engagement Organisational Domain of Engagement Clarity about Terminology 2. Barriers to active consumer and community engagement in health services Due to the complexity and diversity of literature about the evidence and methods relevant to health services, a higher order structure was developed. This higher order structure is based on a synthesis of the National Safety and Quality Health Service Standards and was used as the framework to present the findings (3): Partnerships in direct care Partnerships in organisational design and governance 5 P a g e

6 A third theme of Organisational requirements to support consumer and community engagement was identified. There are a number of sub themes which the Australian Commission on Safety and Quality in Health Care have identified as foundational organisational requirements to support partnerships with consumers and the broader community (3). Leadership and strategic vision Governance framework Skilled and informed workforce Environment (physical and policy) Evaluation and monitoring Access to records. It was beyond the scope to address each of these organisational requirements in this literature review. Skilled and informed workforce will be the focus of a separate scoping paper to be developed further into the WCHN project. This will inform the staff training program to be developed. However, some relevant points were raised to support the need for developing these organisational requirements to sustain and support consumer and community engagement. Many health services fail to adequately attend to these foundational issues and consumer and community engagement can result in a series of ad hoc, unauthentic, and disconnected activities. Due to the complexity and detail provided in the findings, only the key themes and sub-themes will be identified in the Executive Summary for Partnerships in Direct Care and Partnerships in Organisational Design and Governance. Partnerships in Direct Care There is strong evidence on the effectiveness for methods of engagement at the direct care level. These are methods that enable the individual consumer and their carers/family to be involved in shared decision making processes around direct care. Based on the synthesis of the NSQHS Standards, the following key themes and sub themes were identified and used to provide the framework to discuss the evidence and methods of engagement for Partnerships in Direct Care: Shared decision making Participation in communication processes and open disclosure o Communication and ward rounds o Communication and bedside handover o Communication and open disclosure Information provision o Printed information o Electronic media (including social media) o Interpersonal Communication Partnerships in Organisational Design and Governance It is strongly argued that consumers and community have a role to play in shaping the strategic direction, operational planning and organisational processes in health services. There is strong evidence showing that the involvement of consumers in planning, delivery, monitoring and evaluation can make a positive impact in these areas, as well as on the attitudes of health professionals and managers (4-6). 6 P a g e

7 There is also strong evidence that demonstrates that consumer and community engagement has contributed to changes in the provision of health services through involvement in planning and development, and shows how consumers and community members can effectively contribute to decision making to shape the strategic direction, operational planning and organisational processes of health services through various methods (4, 5). Key themes and sub themes identified in Partnerships in Organisational Design and Governance are: Organisational Governance o The nine sub themes addressed in this section are: Functional Organisational Chart mapping Formal Organisational Committee Structures Partnering for Hospital Design and Building Initiatives Determining and Embedding Consumer Centred Values Experience-Based Co-Design Method Open Access Board Meetings Community Collaborative Implementing Policy-Relevant Programs Community Level Methods Consumer Engagement Population-Level Interventions. Safety and Quality Improvement o The six sub themes addressed in this section are: Methods to engage children and young people in safety and quality improvements Consumer Feedback and Complaints Management Consumer Stories Real Time Feedback Quality of Care Reports to the Community Consumers Involvement in Staff Selection. Review and Development of Information o The three sub themes addressed in this section are: Need for Strategic and Coordinated Approach Good Practice Guidelines Methods for Engaging Consumers. Partnerships which Reflect the Community and Support People from Diverse Groups and Vulnerable Populations o The three sub themes addressed in this section are: Strategic Approach Cultural Safety and Formalising Links with Community Groups and Organisations Community Development Approach. Supporting and Informing Consumers who Partner with the Health Service o The three sub-themes addressed in this section are: Consumer Training Support and Capacity Building o Strategic Leadership o Facilitator/Coordinator Support o Mentoring o Reimbursement. 7 P a g e

8 Communicating with Consumers o Develop a Database o Develop and Implement a Communication Plan. Conclusion The literature on consumer and community engagement in health services is extensive. There were complex and inter-related concepts, approaches and methods identified in the literature review. The challenge was to identify the best evidence to support the development of a Consumer and Community Engagement Strategy, which would meet NSQHS Standards and enable meaningful and authentic engagement of consumers and community in partnerships in direct care and partnerships in organisational design and governance. Whereas the evidence to support consumer and community engagement in direct care and organisational design and governance is compelling, there were few comparative studies and evaluations of consumer and community engagement methods that would be transferable to all health service contexts. Whilst valuable and informative, much of the literature about methods of consumer and community engagement in health services did not provide the level of evidence required to conclusively and definitively provide a strong evidence base for the development of the WCHN Strategy. Instead there are a range of options for WCHN to consider, some of which have a strong evidence base, some are evaluated and may be transferable, others are descriptions of what other health services have found useful and published an account of, and others are guidelines to guide practice. A key finding is that consumer and community engagement methods are often context specific and there is no one size fits all approach to consumer and community engagement. An exciting opportunity exists for WCHN to utilise this literature review as a spring board for ideas as they move forward to strengthen consumer and community engagement. However, this is underpinned by another key finding, which is that effective, meaningful, and sustainable consumer and community engagement will only be achieved if the appropriate organisational attributes and processes are in place. 8 P a g e

9 Introduction The Women s and Children s Health Network (WCHN) in South Australia has commissioned this literature review. This is for the purpose of informing the development of their Consumer and Community Engagement Strategy. The aim is to base decision making about the development of the Strategy on best available evidence and insights into effectiveness of consumer and community engagement strategies in health services. Consumer and community engagement in health services has been a priority in international and national policy for several decades. Consumer and community engagement offers a promising pathway toward better quality health care, more efficient health care and service provision, and improved population health (1). Consumer and community engagement involves bringing the voice of consumers and the community into various aspects of a health service s work (1). There is an underlying assumption that through engaging with consumers and the community that there will be at least some level of power transfer and contribution to decision-making processes. Various commentators in their deliberations about the complexities of consumer and community engagement in practice have discussed the different range of factors for health services to consider when developing approaches to consumer and community engagement activities. They represent the multiple contexts in which engagement activities take place (2). o Unstructured Structured o Informal Formal o Passive Active o Individual Collective o One-off Ongoing o Unpaid Paid o Reactive Proactive o Self-interested Altruistic o Resisting social change Driving Social Change Gregory (2008) states that there is no one size fits all approach to consumer and community engagement (1). Methods and techniques should be selected in response to the issues being addressed. Different methods and techniques will be needed at different stages and multiple approaches to engagement will be necessary for health services to be effective in their engagement strategies (1). Two overarching conceptual models appear to interact and underpin consumer and community engagement within health services. These are Patient and Family-Centred Care and Health Literacy. Patient and Family Centred Care Consumer and community engagement in health services is based on a model of care and service delivery that is responsive to the perspectives, needs and values of the consumers and communities served by the health service. It is an approach to care and service delivery where the needs of the patient come first (7). 9 P a g e

10 The various models identified in the literature were, person-centred care, patient-centred care, consumer-centred care, family-centred care, partnership-in-care, patient and family-centred care. These are often used inter-changeably in different health care settings and underpin contemporary health care policy, management and clinical care. These models of care are described as both a method of care delivery and a philosophy that value the vital role the patient and family play (8). In Australia, a patient and family-centred approach is supported by the Australian Charter of Healthcare Rights, the Australian Safety and Quality Framework for Health care, and National Safety and Quality Health Service Standards (9). In South Australia patient and family-centred approach is supported by a Policy Directive: Framework for Active Partnerships with Consumers and Community (10). From a medical ethics perspective, patient and family-centred care fulfils health care professionals and the health services obligations to place the interest of the patient within the family context above all else (11). Families are seen as a vital part of the care experience, especially in the care of children, young people, and maternity care. Families can have a profound influence on the individual patients health and well-being and should be viewed by health professionals, policy makers and health service managers as essential partners in care and co-designers of care, rather than having less important perspectives, or being hindrances or nonentities (11, 12). Patient and family-centred models require health professionals and health service managers to shift from a position of care-prescriber and we know best, we are the experts to one of collaborator and working in partnership with the patient and family (8, 13). In addition, Luxford (2013) argues that these models of care are a shift from provider-focused paternalism, to patient empowerment (14). These models also require patients and families to change from being passive recipients of care, to be more actively involved in care, and decision making around that care (13). Models of care, such as of family-centred care and partnership-in-care began to underpin paediatric care up to four to five decades ago, with varying degrees of commitment to application in health services over that time (8, 15). Lack of clarity and a common understanding of the concepts such as partnership-in-care and family-centred care have resulted in the varying extent to which these models have consistently been applied in practice (8, 16). Key attributes of family-centred and partnership-in-care are: valuing the patient and family s knowledge and experiences; supporting the family in their role as care-giver; and incorporating the patient and family s expertise into clinical and psychosocial care (8). Key strategies for building patient and family centred care into a health service include: regular monitoring and reporting of patient feedback data engaging patients, families and carers as partners demonstrating committed senior leadership building staff capacity and a supportive work environment establishing performance accountability supporting a learning organisation culture (17). A synthesis of studies by Curtis-Tyler (2011) identified that the key levers to patient-centred care with children include (15): 10 P a g e

11 engaging with children s expertise about their own lives; their personal and social experiences in their care, including how these are affected by their relative lack of power in some settings; exploring children s understandings and preferences in terms of their physical sensations and day-to-day experiences; willingness to find resources to engage with even the youngest children; and avoiding age-based assumptions about children s contributions to their care. Curtis-Tyler concludes that action by health professionals on these levers may present a range of challenges as they represent a shift away from the historical focus of children developing competencies to engage, to a focus on children s social realities from the earliest ages (15). Patient and family-centred care is one of the six quality aims for improving care. It is recognised as a dimension of high quality care in its own right (17). Studies have found that patient and familycentred care improves clinical outcomes, decreases costs, and provides the opportunity for shared decision-making (11). Shields et al. (2012) report on their Cochrane systematic review that assessed the effects of familycentred models of care for hospitalised children. They identified that there was a lack of randomised trials on which to compare results. However, the studies that met the inclusion criteria suggest some benefits of a family-centred care, such as higher standard of care provided, lower costs, and increased parental satisfaction. There was no evidence of harms (18). Health Literacy Health literacy of consumers is integral to the effectiveness of consumer and community engagement, especially in the delivery of high quality and appropriate care and improving the safety and quality of health services and the health system (19, 20). Health literacy involves the ability to read, understand, evaluate and use health information to make appropriate decisions about health and health care. Low health literacy is associated with health inequalities, and people with low health literacy tend to have poorer health and a greater risk of hospitalization (21). The need for health consumers and the community to be health literate in today s society is greater than ever before. Health consumers are required to participate in more complicated preventative health care and self-care regimes, understand more complex health information to make decisions and take action, navigate more complex health systems, and have input into improving the safety and quality of health services (22). The Australian Commission on Safety and Quality in Health Care separates health literacy into two areas (23). Individual health literacy is the skills, knowledge, motivation and capacity of a person to access, understand, appraise and apply information to make effective decisions about health and health care and take appropriate action (23). Health literacy environment is the infrastructure, policies, processes, materials, people and relationships that make up the health system and have an impact on the way that people access, understand, appraise and apply health-related information and services (23). Health literacy is the junction between general literacy, health, and health care but also can incorporate aspects of the other types of literacies (such as traditional (general) literacy, media literacy, information literacy, computer literacy, and scientific literacy) to varying degrees (22). 11 P a g e

12 Health literacy is important for consumers as it affects their capacity to make decisions and take action to manage their health and access health services (24). Health literacy is a significant issue for Australia. The Australian Bureau of Statistics (2008) identified that nearly 60% of adult Australians have low individual health literacy (25). Low individual health literacy is associated with higher use of health services, low levels of knowledge among consumers and poorer health outcomes (21). Strong international evidence shows the negative relationship between health literacy and a health consumer s ability to function within health care settings, as well as the ability to understand prescriptions and diagnoses, chronic disease management and provide informed consent (24). There is a need for health services to consider ways to improve health literacy of consumers and the community as part of a consumer and community engagement strategy (24). Health literacy is linked integrally to the National Safety and Quality Health Service Standards (NSQHS). There are a range of actions that require health services to working closely with consumers in the delivery, planning and evaluation of health care and services to ensure that the health service delivers care and services in a way that is understandable and that meets the needs and preferences of consumers and the community (24). To address health literacy in a coordinated way, it is necessary for health services to: Embed health literacy into high-level organisational policies and practices. Ensure that health information is clear, focused and useable, and that interpersonal communication is effective. Integrate health literacy into education for consumers and health professionals (24). Health literacy interventions have three key objectives: to provide information and education, to encourage appropriate and effective use of health care resources, and to tackle health inequalities (26). 12 P a g e

13 Search Strategy A structured literature search was used to search widely across different sources of published literature. The search was conducted in January It examined relevant Australian and international studies and reports. The literature search was not intended to be systematic; it was structured to provide an account of the current evidence related to the following range of search questions. There were two parts to the search strategy. Part 1 was to locate examples of Australian health service consumer and community engagement strategies and plans, and Part 2 was to locate evidence for consumer and community engagement in health services and the methods used. Part 1: Consumer and community engagement strategies and plans Search Question 1 What Australian health service consumer and community engagement strategies and plans are publically available, how are they structured, and how do they relate to National Accreditation Standards? Type of information required Examples of consumer and community engagement strategies developed in the past three years by Australian health services. Resources to Search Search engine - Google Children s Health Care Australasia (CHA) Review Process Strategy documents were compared and contrasted for structure, conceptual frameworks used and content. A separate summary document was prepared for the Project Management Group and the Project Advisory Group. Information about conceptual frameworks has been integrated into the literature review in the findings section. This is part of the discussion about the Need for Conceptual Clarity. Part 2: Evidence for consumer and community engagement in health services and the methods used Search Question 1 What internationally published strategies for consumer and community engagement in have been effective for involvement in: Health service governance? Health service planning and design? Health service evaluation/monitoring? Health service safety and quality? Search Question 2 Are social media and web-based strategies effective for consumer engagement by health services? 13 P a g e

14 Search Question 3 What practices increase engagement at point of care? Search Question 4 What are effective strategies for engaging children and young people? Stages of the Search Strategy The search strategy had five stages: 1. The search engine Google was used to identify grey literature not traditionally published in the biomedical bibliographic databases. 2. The electronic Library data bases Scopus, Science Direct, and ProQuest were used to search the academic literature. 3. Reference lists of key publications identified in stage 1 and 2 were searched for key publications which required further examination. 4. A Literature Map was developed. 5. Where gaps were identified, more specific searches were conducted in the electronic library databases and search engine Google. Search Terms The review utilised the following concepts to guide the search strategy. Combinations of concepts were used as search terms for the structured literature review. Concept 1 - Population Concept 2 Issue Concept 3 Organisational Setting/strategies Consumer Participation Health service governance Community Engagement Health service planning and design Patient Involvement Health service evaluation/monitoring Women Experience Health service safety and quality Parent Social media strategies Child Web-based strategies Youth Staff training/development Aboriginal CALD/Multicultural Definitions When conducting the literature search, the following definitions were used from SA Health Policy: A Framework for Active Partnerships with Consumers and Community (10): Consumers: patients and potential patients, carers and organisations representing consumers interests. When referring to consumers, SA Health is referring to patients, consumers, families, carers and other support people. Carer: a family carer is someone who provides care and support for their parent, partner, child or friend who has a disability, is frail aged, or who has a chronic mental or physical illness. 14 P a g e

15 Consumer advocate: a person who advocates the consumer perspective and has the requisite experience to speak as an informed consumer. Community: Refers to groups of people or organisations with a common interest, including nongovernment organisations who represent the interests of health consumers. While some communities may connect through a local or regional interest in health, others may share a cultural background, religion or language. Some communities may be geographically dispersed but linked through an interest in a specific health issue by the internet, or some other means. Consumer engagement: informs broader community engagement. Health consumers actively participate in their own healthcare and in health policy, planning, service delivery and evaluation at service and agency levels. Community engagement: refers to the connections between government, communities and citizens in the development and implementation of policies programs, services and projects. It encompasses a wide variety of government-community interactions ranging from information sharing to community consultation and, in some instances, active participation in government decision making. It incorporates public participation, with people being empowered to contribute to decisions affecting their lives, through the acquisition of skills, knowledge and experience. Consumer Advisory Group: an advisory group established by a health care service which compromises of consumers and / or carers including those from diverse and hard-to-reach groups who use the organisation s services. The consumer advisory group provides a structured partnership between consumers and / or carers and the health care service on safety and quality issues, patient experiences, consumer centred care and other issues identified in its terms of reference. Consumer group: group of consumers, carers and / or healthcare providers with experience and / or expertise relevant to your health care service. The group is convened to provide advice and feedback to your healthcare organisation on specific issues, including safety and quality improvement activities, patient experience and consumer centred care. Consumer nominee: a person nominated by a consumer organisation or group for consideration for appointment by the requesting body. Consumer representative: a person who represents a consumer organisation or group and is authorised to speak on behalf of that organisation or group, making them accountable to and responsible for reporting back to that organisation or group. Consultation: a method to engage early with consumers and/or community to obtain feedback on issues, analysis, alternatives and decisions being considered by SA Health. It should be considered as part of an engagement process. Inclusion Criteria Relevant to search questions Available in English language Years (except if deemed important to include) Full text available From a credible source (refereed journal preferred and Government websites) Journal articles reporting original research and/or conceptual frameworks/models Non-original or summarised literature (systematic and non- systematic literature reviews, critiques and commentaries) Research reports Evaluations of participation methods and activities. Management of Information References were entered into EndNote and e-publications saved to an electronic database in a specific Folder. 15 P a g e

16 Rationale for the approach used A structured literature review was utilised. Literature was searched for across different sources of published literature. A structured literature review differs from a systematic review in that there were no judgements made of the grade or quality of the evidence, or to assess if the results were generalisable (except where comments were made by the original authors). The reasons for taking this approach were in part due to the nature of the evidence, and to respond to the search questions. Identifying potentially relevant publications Initially 10,008 potentially relevant articles were identified. Titles and abstracts of published journal articles, or the executive summary of reports, were visually scanned to ascertain if they contained information that would meet the inclusion criteria. Review and Analysis Process When the information outlined in the abstract or executive summary appeared to be relevant to the search questions, the full text of the publication was sourced, downloaded, printed and reviewed. A total of 204 references were downloaded, printed and reference details entered into EndNote. Further examination of the full text of each publication was conducted. Thematic analysis was undertaken and key themes were determined. A Literature Map was developed to organise the literature and build a visual picture of the key themes as they emerged as the literature was reviewed. Once the complexity of the scope of the emerging themes was determined, the decision was made to utilise a higher order structure for presenting the findings about methods of engagement based on a synthesis of the National Safety and Quality Health Service Standards (3). Additional references were sought to contribute to the depth of evidence and examples provided. A total of 161 references were included in the literature review. Limitations There were a number of limitations to the literature review: 1. The extensive literature on consumer and community engagement is dispersed across a wide range of publications types. 2. The concepts identified above do not tend to sit easily with MeSH terms, which are used for searching in many of the academic library databases. When initial attempts were made to search by matching the concepts to MeSH terms the search revealed massive amounts of references but very few relevant articles. Only academic library databases which enabled searching for the above search terms could be used (e.g. Scopus, Science Direct, and ProQuest). This was on the advice of the Health Specialist Librarian at Flinders University Library. 3. There were few published evaluations of consumer and community engagement methods and activities. The evaluations that were found were mainly process evaluation or descriptive in nature. Comparative studies were hampered by lack of consistent evaluation frameworks. This was due to contextual issues such as variations in: Terminology used Conceptual frameworks used Methodologies used. 4. Much of the literature identified was grey literature which was found through the search engine Google. These consisted of government publications which were either guidelines for health services, or were literature reviews to support policy directions. 16 P a g e

17 Terms Used in the Findings of the Literature Review The terms consumer and community will be used throughout the report on the findings of the literature review to refer to: People Patients Users, service users or potential service users Public Citizen Lay people Carers Survivors Clients Informants and key informants The use of the terms consumer and community in the report is to aid the flow of the literature review and to avoid the potential of confusing the reader by using different terminology. Where direct quotes have been included, the terms used by the original authors will be used. In addition the term engagement will be used throughout the report on the findings of the literature review to refer to activation, experience, involvement and participation. Where direct quotes have been included, the terms used by the original authors will be used. 17 P a g e

18 Findings The literature review revealed that there are complex and inter-related concepts, approaches and methods related to consumer and community engagement in health services that are relevant to WCHN as they consider the development of a Consumer and Community Engagement Strategy. The following themes and sub-themes emerged from the thematic analysis of the literature: 1. Need for conceptual clarity Principles of Engagement Levels of Engagement Organisational Domain of Engagement Clarity about Terminology 2. Barriers to active consumer and community engagement in health services. Due to the complexity and diversity of literature about the evidence and methods relevant to health services, a higher order structure was developed. This higher order structure is based on a synthesis of the National Safety and Quality Health Service Standards and these themes are used as the framework to present the findings (3): Partnerships in direct care Partnerships in organisational design and governance Organisational requirements to support consumer and community engagement Need for Conceptual Clarity The literature, and the examples of Australian health service consumer and community engagement strategy documents, revealed that many different terms and concepts are used as part of conceptual frameworks for consumer and community engagement strategies in health services. There was a lack of clarity. Clarity of conceptual framework is important as it provides the overarching structure for the understanding and practice of consumer and community engagement in health services. The concepts that made up the most comprehensive frameworks in the literature related to: o Principles of Engagement o Levels of Engagement o Organisational Domain of Engagement Different terminology was used to describe these concepts, so for clarity and consistency the above headings will be utilised in presenting the findings in the Literature Review. These will be each discussed separately to provide insights into the range of options available for WCHN to consider. In addition a new Engagement Cycle is presented for consideration. Principles of Engagement underpin the conceptual framework and will be presented first. Principles of Engagement Principles of consumer and community engagement underpinned several health services frameworks for consumer and community engagement strategy, and the SA Health policy. The principles underpin consumer and community engagement practices and are a way of holding health services accountable for the way they approach consumer and community engagement. There appeared to be several ways of utilising principles to underpin frameworks. Some health services 18 P a g e

19 (27)utilised the IAP2 Code of Ethics (28) as their principles of their Promise to the Community. A health service (29) developed their own principles to meet the Convention on the Rights of the Child (30). Other health services have adapted existing principles such as those from the OECD (31). SA Health (10) have included principles in their Policy directive based on the Australian Safety and Quality Framework for Healthcare (32). Deitz discusses transforming health care for children and their families (33). He argues strongly for the number one principle to be Empathy when engaging with people in health services, especially with children and families. Empathy is not incorporated in any of the examples of Principles of Engagement identified in the literature search. Sarrami Foroushani (2012) identified in their meta-analysis of the literature that shared decision making was an underlying principle of consumer and community engagement and that it relates to all domains of engagement. However, shared decision making, was not incorporated as a stated principle in any of the examples of Principles of Engagement identified in the literature search (34). In some examples, shared decision making is incorporated as a component of patient-centred care. The Lucian Leape Institute (2015) strongly support transparency as a fundamental principle of health care provision and consumer engagement (35). Transparency was not incorporated in any of the examples provided, but openness was included in one of the examples. The following provide a range of examples of the Principles of Engagement from SA Health, Children s Health Queensland Hospital and Health Service, OECD and IAP2. There are similarities between some examples, such as the inclusion of the principles Partnership, Patient Centred Care, Engagement/Participation, Support, Diversity, Rights, and Continuous Improvement. However, most of the documents contain many different and varied principles of engagement. There was no research literature located that could provide evidence that having Principles of Engagement had an impact on the way consumer and community engagement was enacted within health services. Nor was there any evidence to determine which set of principles of engagement would provide the most effective principles to underpin a conceptual framework. SA Health Framework Principles The Principles in the SA Health Policy Framework (2012) (10)are based on the Australian Safety and Quality Framework for Healthcare (32). SA Health emphasise that these principles are consumer centred, driven by information and organised for safety. Principle 1 Partnership Partnering with consumers and the community to design the way care is delivered to better meet patient needs and preferences. Consumers and the community engage with the health care service organisations in the strategic and /or operational planning for the organisation, as equal partners. Principle 2 Engagement Consumers and the community are actively encouraged in decision making about improving the consumer experience, safety and quality and service improvement. Principle 7 Access and information Consumers and the community have a right to access and receive information and education about their health and wellbeing in a way that meets their individual needs, and is a form that the consumer understands. Principle 8 Support Consumers and the community are provided with support they need to engage with the healthcare system. This requires a workforce with expertise in 19 P a g e

20 Principle 3 Patient and consumer centred care Patient and consumer centred care is healthcare that is respectful of, and responsive to the preferences, needs and values of patients, consumers and the community, with dimensions including respect, emotional support, physical comfort, information and communication, continuity and transition, care coordination, involvement of family and carers, and access to care.. This means: treating patients, consumers, carers, families and the community with dignity and respect encouraging and supporting engagement in decision making by patients, consumers, carers, families and the community communicating and sharing information fostering collaboration with patients, consumers, carers, families, the community and health professionals in program and policy development, and in health service design, delivery and evaluation. Principle 4 Diversity Partnerships are reflective of the diverse range of backgrounds in the population served by the health service organisation, including those people who do not usually provide feedback. The consumer engagement. This means: implementing training for clinical leaders, senior management and the workforce on the value of and ways to, facilitate consumer engagement and how to create and sustain partnerships facilitating access to relevant orientation and training for consumers and / or carers when partnering with the organisation. Principle 9 Charter of Health and Community Services Rights Consumers and the community are aware of their rights and; that a person should be entitled to participate effectively in decisions about his or her health, well-being and welfare; that a person should be entitled to take an active role in his or her health care and in decisions about the provision of health or community services to the person; that a person should be entitled to be provided with appropriate health or community services in a considerate way that takes into account his or her background and any requirements that are reasonably necessary to ensure that he or she receives such services; that both professional and non-professional providers of health and community services should be given consideration and recognition for their contribution to health care and the well-being and welfare of individuals that a person should be entitled to obtain reasonable access to records concerning his or her health or other personal information relating to the person (taking into account what is appropriate and reasonable in the circumstances of a particular case), but that otherwise the confidentiality of such information should be maintained that a person should be entitled to have access to procedures for dealing with complaints about the provision of health or community services. Principle 10 Continuous improvement, measuring and evaluation Consumers and the community participate in continuous improvement activities, including the collection, analysis and reporting of safety and 20 P a g e

21 health service engages with individuals and groups including Aboriginal and Torres Strait Islander people, people with a disability, older adults, young people, people with a mental illness and people from cultural and linguistically diverse backgrounds. Principle 5 Feedback and consumer experience Consumers and the community provide feedback about their experience and participate in the evaluation of patient information data and develop action plans. Consumers and the community are engaged in the planning and implementation of quality improvements. Principle 6 Empower consumers and the community to be equal partners in care and treatment Consumers and the community are empowered to improve the safety and quality of health care and partner with healthcare professionals. quality and other performance measures, the results of which are interpreted and communicated in plain language and design. Principle 11 Consumers and the community, and research and evaluation Consumers and researchers working in partnerships based on understanding, respect and shared commitment to research that will improve the health of humankind. Children s Health Queensland Hospital and Health Services Principles of Engagement Children s Health Queensland Hospital and Health Services (2012) have 9 principles included in their consumer and community engagement strategy (29). They aim to undertake community engagement activities that: encourage and respect consumer and community engagement are meaningful to consumers/community according to directions established by the CHQHHS empower staff through training and education to enable effective dialogue establish engagement systems and processes that are sustainable collaborate with a shared vision and mutual trust among all people involved evaluate outcomes against goals. Children s Health Queensland Hospital and Health Services state that this approach acknowledges the United Nations Convention on the Rights of the Child: Children have the right to the best possible care, to be listened to, to have their thoughts and feelings understood and to be loved and cared for by others (30). The 9 Principles of Engagement are: Principle 1: Participation Consumers and community participate and are involved in decision making about the health care system. Principle 2: Person-centred Engagement processes are consumer and community centred Principle 3: Accessible and inclusive Needs are considered to enhance accessibility Principle 6: Mutual respect and value Engagement is undertaken with mutual respect and valuing of each other s experiences and contributions. Principle 7: Support Consumers and community are provided with the support they need to engage meaningfully with the health care system. Principle 8: Influence Consumer and community engagement 21 P a g e